Are you neurodivergent?

[fintangel]

Have you been diagnosed with, or do you suspect you might have ADHD or ASD or a combination or both?

YABU = yes
YANBU = no, I’m definitely neurotypical

How do young people who are less visible, who internalise difficulties and hide them only quietly hurting themselves get early support and intervention? Short answer they don’t. So this will penalise women and girls leading to even worse outcomes.

That's the whole point though and what I've been trying to get at in this thread. At the moment diagnosis is a vital gateway for support and extra accommodations. Just because you don't warrant a diagnosis it absolutely doesn't need you don't need support. Currently it's very much a binary system which doesn't reflect reality. You even see it on forums like this. Posters will comment that they think they might have ADHD or ASD but the minute they say they are undiagnosed then attitudes change and there is a belief that this could be someone that's totally NT trying to jump of a bandwagon rather than someone that is genuinely struggling with ND traits that might not meet an official threshold. If you leave those people to struggle then lo and behold their symptoms get worse and suddenly they are diagnosed.

No at the moment we have a reactionary system where only those in crisis get anything, if at all. Women and girls are left until crisis because severe struggles are often masked and hidden. It then becomes clear and more open when the wheels fall off by which time it’s harder and more expensive to treat. With earlier diagnosis (which they recognises has a positive impact )comes professional awareness,self awareness and less self loathing . In the case of adhd it also brings much needed medication which helps with self medication, impulsive behaviour and academic struggles.

No, that isn't what the report suggests at all. The report suggests early intervention and support. Not necessarily early diagnosis. It is meant to stop the struggles escalating to a point where they need a diagnosis. He explicitly doesn't want to push everyone that is struggling onto the diagnostic pathway. This is why the risk of overdiagnosis has been picked up because he has noted that depression and anxiety can spike in people and mimic symptoms of ADHD. Pushing people quickly through an unrobust diagnostic process (which he also recognises is an issue for both the NHS and private clinics) is going to end up with a lot of people being handed inappropriate diagnoses.

I’m one of those ‘academically coping’ girls you describe - so grammar school and then university. Ended up living with a constant stream of domestic abuse and now too ill to work .:::.. all of which my psychiatrist puts down to living with undiagnosed and unsupported ADHD and autism.

Regarding today’s report - most of what I have heard directly from the horse’s mouth sounds reasonable. The press are of course having a field day saying that ADHD and autism are being overdiagnosed but that it not what Prof Peter Fonaghy is saying.:.: his is saying there is a risk it could happen due to the immense pressures in the system.

Nobody is pushed through or gets a diagnosis quick.

But how are autistic /adhd women and girls going to get early intervention and support when a lot of their huge struggles are hidden until they can’t cope anymore?

How is the fact that early diagnosis( before struggles and crisis) is hugely helpful to many autistic / adhd women and girls going to be facilitated?

Surely the squeaky wheels ie boys and men are going to be seen as more needy and will be getting the support before crisis whilst girls and women will only get the support when they’ve gone into crisis and become more visible..

Year 7 is when the wheels start to come off for many autistic andhd women and girls. They hide it. And then by year 9 many are self harming, suicidal, in the throes of EDs (which are more deadly and harder to treat with ND) self medicating etc. ND women and girls often like to fit in,if diagnosed earlier girls can learn why their have difficulties, embrace difference and get support to handle difficulties before they turn into massive difficulties. There is a huge danger that this now won’t happen.

I think there is some really good stuff in this review however I think women and girls and how they present have been dangerously overlooked within it.

Totally agree

Where has he said

“Pushing people quickly through an unrobust diagnostic process (which he also recognises is an issue for both the NHS and private clinics) is going to end up with a lot of people being handed inappropriate diagnoses”?

He has actually highlighted how people are waiting far too long particularly for under diagnosed groups and actually how timely diagnosis is important.One presumes he means women and girls, people of colour. He recognised the under diagnosis concerns highlighted by the adhd task force and is highlighting how the woeful system could increase risk for over diagnosis. He interestingly also pointed out there is no fall in severity or impairment.

On the basis of evidence available to us we cannot conclude that
overdiagnosis is occurring at scale, particularly given the gaps in
population prevalence data and data reporting. However, if present trends
continue we are clearly entering a phase in which the balance of risks is
changing, from previous merited concerns with under-recognition and
underdiagnosis towards an increased risk of misdiagnosis and overdiagnosis,
which are becoming increasingly important considerations for policy and
service delivery.

Under-recognition nevertheless continues for some groups. The
increasing risk of overdiagnosis or misdiagnosis cannot mean
neglecting those often overlooked. The requirement is for comprehensive,
high-quality assessment and timely diagnosis where needed, while making
practical and clinical support available according to need rather than
diagnosis alone.

None of this should be taken to suggest that people’s distress or
difficulties are not real. If anything, the evidence points the other way: the
rising numbers coming forward for assessment have not been accompanied
by any fall in severity or impairment – those now presenting are no less
affected than those identified before. People are seeking answers and support
for very real problems, and they are not the problem.

One of the central suggestions of the report is to provide support earlier instead of waiting years for a formal diagnosis before anything happens. The report does not suggest that diagnosis of ADHD and autism is to be avoided.

In the end, they are neurodevelopmental conditions. Early support could definitely help but these conditions are not going to go away, no matter what is put in place. However, the earlier support could help to prevent many comorbidities.

Regaeding ‘unrobust diagnosic process’ - I heard Prof Fonagy on the radio this morning. He said some private diagnosis providers were excellent and some weren’t. He thinks they should be quality controlled by an independent body. He is not saying there
is anything wrong with the diagnostic process but he is taking issue with the quality of the work of some providers.

No. I hate the term "neurodivergent". It's a very broad group of conditions that are neurological. It covers not just ADHD and Autism but also dyslexia,.dyscalculia, dyspraxia, epilepsy and many more. I'm not sure why people use it. I think they think it is another word for ADHD or Autism. (Former psychologist).

In the end, they are neurodevelopmental conditions. Early support could definitely help but these conditions are not going to go away, no matter what is put in place. However, the earlier support could help to prevent many comorbidities
This is incredibly frustrating because the report is clear that it's not just about preventing co-morbidities but about reducing the risk of overdiagnosis and misdiagnosis. Treating mental distress in more timely manner should stop some tipping into clinical crisis where medicalisation and a diagnosis is required. Mental ill health exacerbates ADHD and ASD and as they are effectively threshold diagnoses this is hugely relevant. Someone with BAP for example could qualify for a ASD diagnosis if their mental health deteriorated and this impacted their symptoms.

I don't know how you can read the report and not understand this is what has been suggested. So strange to insist that it's all about co-morbidities and not the diagnosis itself.

@Carr0tT0p
You included this in your own post
However, if present trends continue we are clearly entering a phase in which the balance of risks is
changing, from previous merited concerns with under-recognition and underdiagnosis towards an increased risk of misdiagnosis and overdiagnosis,
which are becoming increasingly important considerations for policy and
service delivery

He specifically states that:
"Most people are sometimes inattentive, anxious or socially uncomfortable. Having ADHD- or autism-related traits does not necessarily mean someone has a diagnosable condition" and the line between the social and the medical is beginning to blur which leads you people being medicalised to their detriment.

These conditions are undoubtedly still underdiagnosed in older people for example, but this doesn't mean that the balance towards overdiagnosis being more a problem isn't true.

Yes I agree that the report talks about overdiagnosis and misdiagnosis. But very importantly, It also talks about underdiagnosis:

“Underdiagnosis, misdiagnosis and overdiagnosis are different problems, and all 3 can occur within the same system at the same time. They occur across many areas of medicine and are not unique to ADHD, autism or mental health conditions. “. And further on: “Under-recognition nevertheless continues for some groups. The increasing risk of overdiagnosis or misdiagnosis cannot mean neglecting those often overlooked. The requirement is for comprehensive, high-quality assessment and timely diagnosis where needed, while making practical and clinical support available according to need rather than diagnosis alone.”

I was not attempting to summarise the report. I’m not sure why you are interpreting me not mentioning something as not knowing it is
there. So no need to be frustrated. Perhaps just ask me instead?

Regarding BAP and the risk of that being misdiagnosed as autism - I would assume that is one of the reasons why the report is saying that providers need to be quality controlled. Obviously with a good quality assessment, the risk of that happening is significantly reduced because the assessor is meant to make a point of understanding the patient’s past. The diagnostician should be able to ascertain that the patient has BAP plus some significant mental health difficulties which together look
like autism but actually when they take a deep
dive into the full clinical history, they can see it is not autism. This is precisely why a comprehensive high-quality assessment matters.

The comment is within a very large document and you conveniently missed out the bold type above

On the basis of evidence available to us we cannot conclude that
overdiagnosis is occurring at scale, particularly given the gaps in
population prevalence data and data reporting

Or that he goes on to say

“This does not, by itself, establish that overdiagnosis is currently
occurring at scale. Population prevalence estimates are dated, use different
methods and should not be treated as fixed biological ceilings.”

”To balance this concern, the evidence does not show that people presenting today are less
impaired than those presenting previously.”

“One of the most important changes over recent decades has been the
increased recognition of ADHD and autism among girls and women.
Research suggests that at least part of the historical sex difference reflected
lower rates of recognition rather than true differences in prevalence.”

Basically he has not said it’s happening yet but we are entering a phase “towards” an increased “risk”of misdiagnosis and over diagnosis. That will include the misdiagnosis of autistic people with other conditions such as BPD. It can go both ways. There are several reasons for this not least the shit system we have and long NHS waits. He very much advocates timely diagnosis and a needs led plus diagnosis system.

And re your last comment you have cut and pasted parts of separate paragraphs to push your own narrative. He was discussing two different issues-the recent use of the word “neurodiverse” (which isn’t the same as having an autism or adhd diagnosis) and how having an autism or adhd diagnosis is not the same as having a few traits.

“This is accompanied by a
far richer, more accepting public language for mental health and diversity,
shared online and through social media. This is reflected in the term
neurodiversity, the idea that variation in brain function, cognition and
behaviour is part of natural human diversity rather than pathology or disorder.
The expression* *emerged in the 1990s, and is a social, not a clinical diagnostic
term (Chapter 4). However, the line between the social and the medical is
beginning to blur. Neurodiversity describes the ordinary breadth of human
variation rather than something to be diagnosed”

Your quote “Most people are sometimes inattentive, anxious or socially uncomfortable. Having ADHD- or autism-related traits does not necessarily mean someone has a diagnosable condition" was within a wider passage very much validating diagnoses in autism and ADHD.

“Attention deficit hyperactivity disorder (ADHD) and autism are
neurodevelopmental conditions, strongly genetically influenced and present
from early life, influencing attention, communication, behaviour, learning and
how people experience the world. With the right adjustments many people live
full lives; some face substantial difficulties and lifelong high support needs.
Traits related to these conditions, including inattention, social difficulties and
emotional regulation, occur to varying degrees across the population, but
having some of these traits, or identifying as neurodivergent, is not the same
as having a diagnosable neurodevelopmental condition. Diagnosis depends
not simply on the early developmental presence of traits, but on their severity,
persistence and impact on functioning.”

Why do you want to know?

None of these quotes disprove what I'm saying. He explicitly states that he can't conclude overdiagnosis is happening for certain because there are gaps in the data. This doesn't prove it isn't happening either. The last part of your final quote in particular makes my point for me. All of this is influenced by environment and the mental distress he's trying to tackle.

You’re clutching at straws and “Diagnosis depends
not simply on the early developmental presence of traits, but on their severity,persistence and impact on functioning.” absolutely does not say diagnosis is influenced by environment and mental distress.

This is ridiculous. Science has absolutely proven that ADHD and ASD are strongly influenced by epigenetics. There are countless studies on this. This will impact how someone's underlying genetic factors and early developmental traits manifest and will have a huge influence on the severity, persistence and impact on functioning. Why do you think he's linked mental distress to diagnosis and cases of misdiagnosis over diagnosis?

I do not mean to be rude but you are absolutely the one clutching at straws to pretend that his report in any way was advocating early and wider diagnosis as the main solution to all of this. If you can't comprehend this then I don't see the point of continuing this discussion. Policy changes will hopefully happen that leads to earlier and broader intervention and this should lead to lower diagnosis rates or at least stop the rapid escalation amongst specific groups.

I was replying to your declaration that the quote “Diagnosis depends not simply on the early developmental presence of traits, but on their severity,persistence and impact on functioning.” meant diagnosis is influenced by environment and mental distress. It doesn’t.

Youre putting words into my mouth . I did not say it was advocating early and wider diagnosis but that it acknowledges that timely diagnosis and treatment remain essential and must be protected, its core recommendation is that individuals should receive support and early intervention immediately based on their needs, without having to wait for a formal clinical diagnosis .

The goal is for a “needs-led plus diagnosis” system not just a needs led system or just a diagnosis system. The aim is not to reduce or arbitrarily cap diagnoses.Instead, the report’s stated goal is to overhaul a broken, overloaded system by shifting from a "diagnosis-dependent" model to a "needs-led plus diagnosis" system. Individuals experiencing mental distress or neuro developmental challenges should receive early, multi-agency assistance.

The review actually emphasises that a formal diagnosis remains valuable for validation and specialised care, stating it must be protected, “what has to change is that it is no longer the only door through which help can be reached”.

For those on waiting lists, the report calls for a clinical review to prioritise individuals with severe functional impairment, self-harm risks, imminent school exclusion, or risk of unemployment. Alongside the needs-led focus, the review recommends stricter oversight of private assessment providers working with the NHS and bringing diagnostic-only services under the regulation of the CQC.

All good suggestions. The aim is not to reduce diagnosis rates and who knows( they certainly don’t and neither do you)if it will, probably not as autism and adhd are for life and support needs can fluctuate. The effectiveness of support needs can fluctuate throughout life too.

By “rapid escalation during certain groups” your words- you mean woman and girls and people
of colour. As has been pointed out to you time and again and highlighted in the report better knowledge re how these groups present contribute to a rise in their diagnosis numbers so it’s not beyond the realms of probability that it’s unlikely they will reduce. Also he said “Population prevalence estimates are dated, use different
methods and should not be treated as fixed biological ceilings."

You're trying to cherry pick and push your own narrative.

A large theme of his report is about mental distress and mental health conditions and how these interplay with impairment and diagnosis. It really isn't a stretch at all.

I posted upthread about the needs based approach. I am totally aware of it and it validated all I've been arguing for on this thread.

I actually meant young males who he references specifically.

I’m focusing on the report itself not your hypotheses or narrative.

Regarding mental distress…. It’s a little more nuanced
than the way you explain here. So, IMHo, Fonagy is saying that

1. An assessment for autism, ADHD, anxiety, sleep disorders etc needs to be very thorough because they produce overlapping difficulties
2. Without the required thoroughness, there is a risk that neurodivergence could be misdiagnosed as anxiety or trauma etc. Or vice versa.
3. Neurodivergence and mental health conditions can co-exist
4. The report does not establish that misdiagnosis or overdiagnosis are widespread,
5. However, the report warns that the conditions in the current system put us at risk of widespread overdiagnosis or misdiagnosis
6. The central recommendation is earlier support rather than waiting for diagnosis before any support is offered
7. Diagnosis can be clinically necessary and people who have significant functional impairments should get more timely diagnoses
8. There is l also underdiagnosis of neurodivergence and mental health conditions

All the report said was that there MIGHT be a risk of over-diagnosis, and then justifies that by saying that however there is no evidence that overdiagnosis is happening.

There is one age cohort (teens) where diagnosis is approaching the estimated prevalence. Most age cohorts are massively below the estimated prevalence.

The right-wing press have leapt upon this to say what they've been wanting to say. Unfortunately it also suits the government agenda who want to keep a lid on demand.

To be fair, the needs-assessment is a really sensible approach which I've been advocating for years.

I know adults who have extremely high needs due to autism. Normal life is completely impossible for them. They muddle through somehow but desperately need proper support, which they really don't seem to get.

For schools, there has to be common sense at some point, when some of the most academically gifted children are the ones receiving much of the additional support whilst the neuotypical kids of lower ability sit bored.

My left wing friends have suggested to me that this is a "scarcity" mindset, and everyone should get 100% of the support they "need". I see their point, and it's a nice idea, but it's just not practical at this point in time, and I'm a pragmatist.

Where the AI revolution comes in, I have no idea. It seems very likely to rewrite the rules of society for at least a generation while we work it out.

Actually having RTFT (sorry) I really see your point about girls. I have direct experience of this leading to an ED and other severe MH issues.

What's tragic is thst I tried so many times in infancy and childhood to get a referral but was always fobbed off. It never occurred to me that this report might not solve that for future generations.

😔